General assembly and annual meeting 2013






Euro-HSP annual meeting and General Assembly

June 10/11 2013

Place: EURORDIS, Plateforme Maladies Rares, 96 Rue Didot, 75014 Paris.



General Assembly


Three guests were unanimously welcomed to sit in, Thomas (Marina´s husband), Kåre Pedersen, President of Foreningen for Ataksi / HSP (DK) and Martin Ott from HSP Selbsthilfegruppe (CH).


  1. Annual report from the president (Dorthe)


  1. Annual report from the treasurer (Ingerid)
  • Report for 2012
  • Budget for 2013 (including our GA in Paris)
    Everyone to turn in Paris receipts to Jean and he will work with Dorthe to calculate the total amount and submit it to EURORDIS within 30 days.


  1. Working with our bank in Paris (Jean)
    Jean has met the new bank account manager and will introduce Dorthe and Marina to him.

 4.      Election of the Board of Directors

  • The president (Dorthe accepts re-nomination)
    Dorthe is re-elected unanimously for two years.

  • The vice-president (Fina accepts re-nomination)Fina is re-elected unanimously for two years. She does suggest that she is training a new Spanish colleague who will perhaps move forward in 2014 to Euro-HSP.
  • The treasurer (Ingerid does not accept re-nomination but will accept nomination as secretary for a year)
    Ingerid is voted unanimously as secretary for one year.
  • The secretary (Marina) (She will accept nomination as treasurer for a year)
    Marina is voted unanimously as treasurer for one year. Both she and Jean will be able to access the account.
  • Scientific advisor (Jean accepts re-nomination)
    Jean is re-elected unanimously to the SA.


  1. Report from our scientific board (Jean)

  • Status
    We have a full Scientific Board established. The scientific board consists of 2 doctors from Denmark, 2 from Norway, 2 from France, 2 from Spain and 4 from Italy. We look forward to working with them.
  • Plans
    The SB needs to be more closely linked to SPATAX, however they move forward. Dr. Chantal Tallaksen (N), Dr. Sobrido (E) and Dr. Santorelli agree. Euro-HSP also needs to reach out to the Tom Wahlig Fdn.


  1. Report from PAC (Patient Advisory Board) (Dorthe)


  • PAC
    A new European project called RD-Connect has been launched in which EURORDIS´ role is to integrate the patient perspective - by establishing The Patient Advisory Council or PAC to guarantee a patient-centric approach and will advise the Governing Board and the coordinator from the patient perspective on a regular basis.

          The members of PAC will collect different patient views on issues like registries, biobanking and -omics

  • Communicate on the project's progress with our constituents
  • Participate in quarterly conference calls
  • Attend and encourage attendance of our organizations constituents in a capacity building workshops
  • Contribute to or review policy documents and reports representing patient views
  • Participate in and distribute questionnaires to our organization's constituents


RD-Connect,, is to create a platform and framework for integrating research data (patient registries, biobanks and genetic data). The project will focus on the creation of infrastructures and procedures for data integration. Two additional projects, EURenOmics and NeurOmics will generate the data. Currently these three projects cover "rare kidney diseases" and "neurodegenerative and neuromuscular diseases" (10 diseases of which HSP is one).



  • The IRDiRC conference in Dublin


          The International Rare Diseases Research Consortium,

 IRDiRC teams up researchers and organizations investing in rare diseases research in order to achieve two main objectives by the year 2020, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases.

The PAC members were invited and 4 of us participated:  Muriel from the French Charcot Marie Tooth Association, Marieka from NephcEurope, Balthasar from the European Federation of Neurological Associations / Euro-Ataxia and Dorthe from Euro-HSP.

 In the 1st IRDiRC conference, more than 400 participants attended representing Europe, North America, Australia and Asia. The conference panels were divided into 3 tracks - therapies, diagnostic and interdisciplinary track. Dorthe attended workshops in the diagnostics and interdisciplinary tracks.


  1. Report from the EUPATI conference (Fina)
    In Rome, EUPATI reported on where they are with Euro-education of patients. They are looking to educate 100 people directly who will then move on to educate 12,000 further patients. Timeline - 2017. There will be national liaison teams.


  1. Ethical rules for working with pharmaceutical companies
    Rob spoke on being transparent, and trying to get agreements in writing before the project begins.


  1. Strategic  action plans for the future
  • Conference and GA 2014
    Denmark - Copenhagen will be investigated
  • New members: enlargement of the Federation to all European countries
    Again, we welcome Martin to the group! We will touch base with UK and Germany again, along with helping Sweden.
  • Funding: Pharma companies, DIA Philanthropy Program, EURORDIS Grant
    Rob and Dorthe have a list of international companies (not to look for funding nationally but internationally) and they have a letter of petition and will be sending out a new ask soon.
    They will also investigate the DIA program and of course, try again next year for the small EURORDIS operating grant.
    Rob also mentions crowd-funding as a source of small donations that we can connect to the new website. This can simultaneously be done by national groups for themselves.
    Perhaps also the Danish Walk (Walk and Roll) can become a European event by coordinating it within our member countries for national support, tied in with an HSP/Ataxia Day?


  1. Other business
    Fina suggests changing everyone's emails to
    Dorthe will bring this up with the new webmaster. Fina also suggests remembering to relate the subject of the text to the title so it is not confusing. Agreed.





Annual meeting (June 10)


  1. Reports from the national associations
    See attached overview and this
  1. Open discussion: our expectations of a conference.
    A conference is postponed until we have more members and new research results.



Annual meeting (June 11)


  1. Scientific Board
    At this part of the meeting Dr. Sobrido (Spain), Dr. Tallaksen (Norway) and Dr. Santorelli (Italy) participated.


  • Discussion: Patient registries; Personal data protection /medical research
    The Spanish registry is moving forward via IRD in Madrid on HSP and ataxia. There is a scientific working group. Sobrido was asked to put it together. For a registry, resources are a question. Who owns it, who has access to it? Informed consent procedures, contracts on IP, . patient registry vs. medical registry. Jean wants a table with patient's mutations and geography. Euro-registry of patients? (Sobrido) Why does Euro-HSP want the registry? Maybe Euro-HSP can do it. What is the registry and how do we guarantee things? Do we include variants, etc? A Euro-database on variants should exist. but how to share? (There are legal issues, jobs, insurance, privacy, etc)
    Resources needed - legal advice, security, pooled or summary data, who has access? Euro-HSP can be the owner and the scientists will support it.
    New Generation Gene Sequencing - not so straightforward. But how to get patients interested in research? Diagnosis, interpretation.


  • Discussion: medical research
    Jean´s paper was discussed. Attached.


 Everybody was asked to write their evaluation of this year´s annual meeting and GA as we didn´t have time to do it at the meeting.


Chair of the meeting: Rob


 GA 2013


From left to right:
Kåre Pedersen, President of the Danish association for ataxia and HSP
Dr. Santorelli, Italy, member of our Scientific Board
Dr. Sobrido, Spain, member of our Scientific Board
Dr. Tallaksen (sitting), Norway, member of our Scientific Board
Marina Zapparoli, Italy, Treasurer
Dorthe Lykke, Denmark, President
Fina Mateo, Spain, Vice-president
Jean Bénard (sitting), France, Scientific Advisor
Ingerid Ringheim, Norway, Secretary
Martin Ott, Switzerland, on the BoD of the Swiss HSP-Selbsthilfegruppe

Missing in the photo:
Thomas (Marinas husband)
Rob Camp, Spain, Mentor and Chair of the meeting


July 03, 2013